The ticking time bomb of death

I have Barrett’s Oesophagus

I look up at Mr C. He has just walked in from being at the gastroenterologist. I am in the kitchen, preparing food. He sits down on the bar stool.

I have Barrett’s Oesophagus,” he repeats.

I don’t know what that means. I look quizzically at him.

It’s where the lining of the oesophagus changes into the same lining of your stomach.” He pauses.  “It carries a risk of cancer.

My heart stops. I can hear my breathing in my ears.

Please don’t worry,” he says. “None of the cells have changed into precancerous cells.”

Precancerous cells? The were looking for precancerous cells?  It was meant to be a routine test to see why his tummy was a bit upset.  When did they say they were looking for precancerous cells?

Mr C continues. “Apparently if cancer is here.” He holds up his one hand, “Then I am here.” He holds up his other hand a meter apart. “Apparently, I have a long way to go before I get here.” He draws his hand to the cancer hand. “If indeed at all.”

I resist the urge to clap my hands over my mouth. I just nod. Every fibre in my being is screaming at me. The lizard in my brain is running around frantically yelling at me that my world is about to collapse in one almighty fucking ton of bricks and there is nothing I can do about it. I cannot breathe.

I have to have another gastroscopy in February because they also found an ulcer and they need to make sure the medication for that is working, then one every two years to check on the Barrett’s so that they can catch the cells if they change, so they can treat it.”

I cannot believe what I am hearing.

Trouble, it seems, always follows us in waves. Mr C lost his job in September. Whilst we have been okay, there is always the worry that the redundancy package will run out before another job is secured. We have managed so well with this uncertainty. We can control that uncertainty – downsizing, selling off what we don’t need, living a more simple frugal life.

But this. This is different. This is an uncertainty that is beyond my control. I have already lost one husband. I have tasted that loss and it is bitter as bitter can be.

I start to feel sick.  I can feel the acidic bile rising up into my throat.

This isn’t fair.  Not fucking fair.  Mr C is an amazing human being. He is good and kind, and fit, and strong and he doesn’t smoke, and he doesn’t drink. He is my Buddha, who keeps me on the straight and narrow and helps me navigate this world that is so fraught with stormy seas for me. He doesn’t deserve to have anything wrong with him, never mind a ticking time bomb that may or may not go off.

Some research tells me that Barretts Oesophagus is a clear precursor to Oeosophageal Adenocarcinoma, a vile and aggressive cancer with only a 17% survival rate of five years. It tells me that of all the people who get Barretts Oesophagus, ironically BO for short, only 10% actually get cancer. Good odds you might think. Unfortunately, at the moment, there is no way to predict who may get it and who won’t. Increased risk lies with those who smoke and drink, so Mr C definitely has odds in his favour, but people who don’t smoke or drink do get OA. Also, some people live with Barretts for years, and then suddenly, BAM, cancer pays a visit.  There is no way to predict who will get it and when.  Like I said, ticking time bomb.

It will be monitored and we are told that the precancerous cells (known as dysplasia) is completely curable, but he will be on medication (to reduce the acid reflux that caused the Barretts Oesophagus in the first place, which we didn’t know about because Mr C is one of those rare cases that had no symptoms at all) for the rest of his life and will have to undergo two yearly gastroscopies for the rest of his life, or until they find changing cells, in which case they will then look at treatment options.

Tick. Tick. Tick.

I have written about how the loss of my first husband and my mom have defined me.  Death is now never far from my mind.  I think about it all the time.  I have been admonished for this in the past.  I should be happy, I have been told, use my losses to realise the beauty and value of life, to embrace it, to live it!  I can tell you there is no beauty and value in watching someone die.

Besides, that is not the way I am wired and I have long since reconciled myself to the fact that death has become very much an internal companion.  I fear it and yet, at the same time, I have reverence for it.  We are mortal.  We are going to die.  We should honour it.  And perhaps in the honouring of death I will find a way to honour, and embrace life, to not fear life as I do now.  It is almost as if I allow myself to embrace and love life, that the losing of it will almost be too much to bear.  That my fear of life, prepares me for the loss I must endure.

And now, I have to find some way to navigate a life living with a time bomb.  Of course, I could choose to live in denial, with positivity and faith that this bomb will not go off.  I am sorry, my friends, life has taught me that that kind of delusion is a fool’s game.

I need to prepare.

And prepare I will.

First of all a lifestyle change.  Drinking was thrown out the window nearly 6 years ago, so that is one big item ticked off the list.

Next, no chocolate.  Did you know that chocolate reduces the efficacy of the lower oesophageal sphincter which prevents the digestive juices from returning back up the oesophagus?  Me neither.  We eat a lot of chocolate.  Not any more.

Next off the list will be caffeine, citrus juices, fried and fatty foods, peppermints, spicy food and tomato sauces.  All things that either reduce the strength of that sphincter or increase acid in the stomach.  You might want to play along, you know, just in case.

Apparently, too, he shouldn’t lie down for three hours after eating to prevent the digestive juices from re-entering the oesophagus.  No late night snacks then.

These are things we can control, but unfortunately with all the will in the world we cannot control everything.  We have to live with that.

I know that some people may look at this and think we have more chance of being involved in a car accident than being struck by this disease, and you are right, of course.  I know that some people may call it alarmist or catastrophising.  And I don’t disagree.  I have no way to explain the irrationality of my fear.  I only have a need to write about them, because at least, then, they are not swimming around in my head, drowning out every rational thought I have.  I only know that by writing them, explaining my anxiety, I gain some semblance of peace.

I want to say life sucks but it doesn’t really.  Life is simply life.  It is full of undulating pathways that take us in directions we never imagined or intended.  No matter how we plan and organise and set our goals, life has an uncanny knack of laughing at our plans and doing its own thing anyway.  It is how we walk those paths that count.  Me?  I run around screaming like a mad thing when the news first hits me, then I go into damage control mode, and then, finally,  I reach a level of calm.  Even as I type this, that calm is settling over me, though I know that my pattern is to panic-calm-panic-calm ad infinitum.

I do know this.  Mr C is my best friend and soul mate.  I am mourning for what he is having to go through and I am mourning a potential loss I may have to endure, no matter when that may be.  There is no rationality in that I know.  Grief is never rational.  I have learned that over and over.  I just have to sit with it.  And I have to hold my soul mate closer and love him more so that if that time comes, when that times comes, because we all must die, I will know that he knew his whole life how very much he was loved, how very much he changed my life for the better and how very much he will be missed.

Until next time,

SHW Signature AmyG Font

Mr C gave me permission to write this post.  I love you, my man xo

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12 thoughts on “The ticking time bomb of death

  1. I am sad to hear this Sarah, and don’t have any words of comfort for you especially since you have lived this fear before. Just thinking of you and you & hubby-you can only really take it one day at a time. Be kind to yourself xx

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  2. Darling girl. It is no small wonder that you panic. Anyone would panic. And if they didn’t, they’d be in some kind of loopy denial. Stuff like this is very very scary, and with the losses you have endured, you understand what things like this can mean. It would be odd if you didn’t freak out a little (or a lot) with news like this. And there is nothing I would love more than to have a rock solid solution to take it all away. Sadly, I don’t. But keep doing what you are doing. Keep holding on to that dear man of yours, keep talking, keep writing, keep on keeping on. Because the best part of life is the loving part. None of us can control all the rest. Just love your way through each day, one at a time. XXXX Big hugs to you from all the way over here. X

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    1. I really love that Rachel, to love my way through life. I do seem to do that quite well. The living part not so much, but certainly the loving part. That helps. A lot. Thank you xx

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  3. I’m sorry that you are going through this Sarah. Never apologise for the way you need to process things, only you have your perspective, your context. Everything else as Rachel says (good god, even her comments are beautifully eloquent!). Thinking of you. xx

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  4. Sarah, as I’m reading this I’m wondering how I would cope in a similar situation. And I know I would be scared out of my wits too. As much as we attempt to rationalize, the fears remain. I’ve learnt to use gratitude as a way to handle my fears. I give thanks for what is – even the ‘bad’ stuff, believing deeply that it will all work for good. I’m sending you and Mr C thoughts and prayers.

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